What Happened to the Camp I Used to Know?

As many of you know or have read in previous blog posts of mine, I went to a camp for kids with CHD from the age of 8 till I graduated high school my senior year. I loved camp more than anything in the world. It was the one place where I was normal and where everyone was like me. It was the only place where my scar wasn't abnormal or strange because everyone had one.

Growing up with camp, we were told that once we graduated the camp wanted us to come back as counselors so other CHD patients who would attend camp would get to see grown ups who made it and lived with their CHD. While graduating from camp was difficult, I looked forward to coming back as a counselor and being able to do for new heart kids what this camp had done for me. Sadly, two years in a row this camp that I have loved so much has not only said no to me, but turned it's back on me. 

Last year when I applied as a counselor, I was informed that there would be interviews held in Arizona for the AZ people who were applying as counselors. It was over my Spring Break and I planned on attending as long as I got back in time from my pacemaker/defibulator battery change up in Palo Alto California. Well we all know that with me, my health never goes as it should and I ended up having complications, which caused me to stay a week in the ICU there. From the ICU, I contacted the camp along with the people who were going to be giving the interviews and let them know what happened. While the group who was in charge of the interviews were understanding and still gave me a great recommendation, camp was not as understanding and I ended up getting wait listed isntead of accepted. Wanting to let the camp director know just what exactly had happened, I sent an e-mail to her.

I was disappointed that the camp director who has known me for the past 10 years of my life did not contact me back. Instead I heard back from her daughter who at the time was in charge of counselors told me that a wait list was not a no and that it was not because I missed the interview day. She told me that if a spot became available due to someone dropping out, those wait listed would  be contacted. No one had to drop out as a counselor, so I was not able to go.

There is a group for CHD patients that have graduated who still want to participate in camp and they hold events every now and then. I got an e-mail earlier this year for a retreat after I applied as a counselor. However the retreat was over the same weekend as my little sister's confirmation day. On top of that, it was out of state (so I couldn't even attend partially). So I e-mailed the new camp director (who is the daughter that I heard back from last year) about this. I have posted below the string of e-mails we shared, starting with my e-mail to her, then her reply and my reply after that. 

Her reply: 

My reply: 

It was disappointing to me to see that this year I was not even wait listed, I got a no. 

For years I have felt as if I was an ambassador for camp. They made a promotional video one year where I was featured. I even have written poems about camp that they have used in their newsletter. My parents for several years paid for us to attend their Gala which is a fundraiser, that I sadly always got sick before and could not attend. Not only that, instead of charging people to stay in our beach house up in Oregon, they ask them to make a donation to this camp. (Whether they made a donation or not, we don't know, but we did ask).

Wanting to know what I could do differently or what I could improve on for next year, I sent them an e-mail asking what qualifications they were looking for in a camp counselor. Here is another set of e-mails I got back from the new director. 

Her reply: 

My reply to her was this: 

I sent that e-mail on last Sunday and I am still waiting for a reply. As some of you know I had a recent doctor appointment with my cardiologist and my EP doctor. When I shared my disappointment with my medical team, they too were confused as to how the camp came to a conclusion that I was not strong enough to be a counselor for a camp.  I asked if camp had contacted them for my records or to talk about my health, and they said no. They were surprised and sad for me that they had turned me down along with confused as to how camp came up with that conclusion without contacting them. 

When I asked about qualifications that they look for, it seemed as if their biggest point was physical strength, which is interesting coming from a camp for those with CHD looking for CHD survivors as counselors. I think it's important to have other qualities in a camp counselor. For the past three years I have taught ASL to kids ranging from 8 years old to 15. I received the "Person of Character" award which was only granted to one girl out of my 600 high school graduating class when I graduated. I was chosen to be a peer mentor for incoming freshman at my college along with being part of my college's community service program. I give anti-bullying talks to middle schoolers and high schoolers along with helping out at my church's nursery when I can. I do this all in-spite of my CHD and PH, while maintaining a good enough GPA to be in the honor's program at my college. 

There is a Facebook account for the camp that is friends with not only myself but some of my camp friends who have gotten accepted as counselors. Being a friend on FB means that the camp can see what we post, so it was surprising to me to see that one of my friends who posts regularly about smoking hookah got accepted as a counselor and yet I did not. 

I will always appreciate what camp gave to me as a camper but now its a topic that is sad for me to think about. I love the life long friends I have made through this camp but it's heartbreaking for me to think about what this camp has become. What happened to the camp that I thought encouraged all the aged out campers to come back as counselors? I ask myself, what happened to the camp I loved? 

Disappointed and Heartbroken,

Becca 

One More Kick In The Gut

I want to apologize for not posting an update sooner, but every time I opened up my computer and started to type up about my latest doctor appointment I couldn't see the screen through my tears. If you follow me on Twitter, Facebook or read my blog update before this one, you know that the hospital called Lucille Packard that had once said they could do my heart-lung transplant that I would eventually need has gotten a new surgeon who doesn't think he can perform the surgery.

So the doctors asked the adult side (Stanford) to see if they thought they could perform the surgery. I went up last Wednesday, had an ECHO, EKG, Pacemaker Check along with a 6 Minute Walk. Things all looked good, they looked the same and I had even lost weight so my low salt diet is working well. But there was something going on. I could feel it. Normally after the arrhythmia discussion and pacemaker stuff is all taken care of, my EP doctor and my EP nurse leave to go to other patients and leave my cardiologist there to talk about other things. But everyone stayed in the room and I knew, I just knew whatever they were about to tell me wasn't going to be good. 

When I asked my cardilogist if they had heard back from the adult side if they could do my transplant when that time came, he just shook his head. I asked even though I knew the answer, "No you haven't heard from them or no they can't do it?" He didn't need to answer, I could tell. My heart caught in my throat and my stomach suddenly felt empty. My doctors have only seen me cry twice in the 7 years that they've known me. Whenever they give me bad news, I've been able to hold it together and I cry once I get back in the car or wait until I'm at home. But I couldn't hold them in this time. Another kick in the gut and my eyes started to tear up. My EP doctor handed me a tissue box and rubbed at my back while my cardiologist told me that this was not a set back they had been expecting and that he had even had a few choice words for them. Have to admit, knowing my doctor cursed for me made me smile because honestly, I wanted to curse too. I wanted to do a lot of things, kick something, scream and yell about how it wasn't fair. But instead I listened to him talk about sending out my records to at least two other centers in the US that could possibly do my transplant when the time comes. It'll be a week on Wednesday since that meeting with my doctors and we haven't heard back yet... I'm hoping and keeping my fingers cross that we get some good news.

If anything good has come from this it's a few things. I learned who in my life really cares about me. When I posted about this on Facebook, there were certain people I expected to hear from that never even so much as sent me a text or posted a comment letting me know that they were thinking about me.  And to be completely honest that made this situation hurt even more. People that I considered friends or people that I thought cared about me not even taking a second out of their day to send me a text. That's what hurt. In my time of need, the people I expected to be there, some of them weren't. But then there were people who posted and even sent me private messages letting me know that they cared that I didn't even expect to hear from. It was so touching to open my Facebook and see messages from people I haven't spoken to in years telling me that they are thinking about me, praying for me and that they are here for me if I need them. So to those of you who have supported me and continue to support me, thank you.

The other good thing that could come from this is that I've never been to St. Louis or Texas, so if either of them accept me as a patient, that'll be another place in the US that I get to visit. Just hope that whoever agrees to take me my insurance will not fight us on it.

Thank you to all of you who have sent me messages, texts and supported me. It means so much to me and I appreciate it more than you could ever imagine. Your prayers and support mean the world to me, thank you for everything!

Hope and Love,
Becca